The Periodic Paralysis Network

Hello All,

Since we have so many new members I wanted to review with everyone about what the Periodic Paralysis Network is all about. We have a forum with several different options for information and support. We have several discussion groups (support, genealogy/genetic, book discussion, medical professional and more), which are all private for obvious reasons. We have two pages, mostly for just reaching others who need to find our help and education. We have our original website with a great deal of information. And we have this blog, which is open, in order to reach everyone around the world (with a translator), including medical professionals. We also have written four books, "Living With Periodic Paralysis: The Mystery Unraveled." It has 444 pages of information, is fully indexed and we used over 250 references. It took us three years to write. Our second book is "The Periodic Paralysis Guide And Workbook: Be The Best You Can Be Naturally." Third we wrote about our medical rights in "A Bill Of Rights For Periodic Paralysis Patients." Our last book is "What Is Periodic Paralysis?: A Disease Like No Other." It is a book that can be shared with others about Periodic Paralysis.

The group, with the most members and used 24 hours seven days a week, including holidays, is our support, education and advocacy group.
 

https://www.facebook.com/groups/periodicparalysisnetworksupportgroup/
 

We welcome everyone and anyone who has any form of Periodic Paralysis or who suspects they have it (also family members). We provide support to those who are diagnosed or attempting to get a diagnosis.

We are an educational group because we provide information based on research. We attempt to answer any and all questions with information we find/found through research. Many of the answers are also in our book and on our website and our blog. Some things are also found in the "Files" section of this page.

We are an advocacy group. We work toward the improvement of quality and safety in healthcare for everyone with Periodic Paralysis. We are a member of the Patient Advocate Directory!!! They are a worldwide network of individuals and independent organizations working toward the improvement of quality and safety in healthcare.

We are here to help you "be the best you can be, naturally" and to keep you safe. Many of us cannot tolerate the pharmaceuticals/drugs/medications, which are typically prescribed and through research and experimentation, we have found natural ways to manage and ease the symptoms of Periodic Paralysis. We share them with you.

As advocates for you, we also pass along the information about the pharmaceuticals/ drugs/medications, which are typically prescribed for every form of Periodic Paralysis. We caution anyone on them or who is considering using them to be aware of the side effects and possible problems from them. We also caution everyone who has Periodic Paralysis to be very careful if you are taking any pharmaceuticals/drugs/medications, anesthetics for surgery and IVs.These are all serious triggers.

The symptoms of Periodic Paralysis, brought on by many triggers can be and are life threatening. Many people with this condition have died from its affects. These can include, but are not limited to breathing, oxygen, choking, heart, and blood pressure issues. One of our main goals is to make everyone aware of these serious issues in order to keep everyone safe. Those of us with PP must take these things seriously. It is essential to avoid going into paralytic episodes. 

Periodic Paralysis is a mineral metabolic disorder and must be treated as such.

Our focus is on educational resources and self-reliance. Our approach to treatment focuses on the self-monitoring of vitals and the management of symptoms through natural methods such as the elimination of triggers and awareness of proper nutrition and supplementation. This approach evolved from the inability of the medical community to provide appropriate medical diagnosis and treatment. We continue to do research and provide the latest information to our members.

Until later…

Updated 8/23/2019

Periodic Paralysis Network Diagnosis Project Part Two

Hello All,

Last year, not long after our book was published, we had two of our members within a few weeks of each other; see a Periodic Paralysis specialist in New York. One of them was clinically diagnosed and another seeking a diagnosis for their child. The one who was seeking a diagnosis for their child was immediately dismissed and treated very poorly after an EMG that did not show any problems (not necessary for a diagnosis and the test is not conclusive nor is it always done correctly) and the one who had a clinical diagnosis was going to lose their insurance and wanted to get some help from the specialist before that happened because she was so ill and getting worse very quickly. She was actually told by a leading ATS specialist that she could not possibly have Periodic Paralysis due to the fact that her potassium levels were "TOO LOW”. They actually drop down to the 1.0s!!! Her original clinical diagnosis was overturned. Each of these families traveled across the country at great expense. The one individual who had her diagnosis overturned, actually received confirmation of a genetic mutation for a form of Periodic Paralysis several months later for herself and other family members!!!!

This was too much for me watching this happen to our members who are so ill and being treated so poorly by misinformed doctors in general and the "specialist" in particular. Instead of continuing to write my second book about Periodic Paralysis, I immediately shifted gears and set out to come up with a set of criteria or a better and easier way to diagnose all forms of Periodic Paralysis clinically…based on symptoms and characteristics, rather than genetics because only about fifty percent of individuals with Periodic Paralysis have genetic mutations which have been located or because the genetic testing is too narrow in its scope.

 
I wrote a plan and made four surveys to gather the information I needed to create a new and better set of guidelines for doctors to be able to diagnose all forms of Periodic Paralysis based on an individuals symptoms and characteristics. Each survey took much longer than I had hoped to get enough members to complete, but we finally got enough information so I began to work on the data and statistics and began to put it altogether. As luck would have it, however, I ended up pushing myself too hard to get this all done and ended up having two TIA's small strokes.  I had to put it all aside for a while as I recuperated. Unfortunately, I have never fully gotten better.

I have, however, begun to feel well enough to resume this project. The information we have gathered has had many surprises and I am anxious to get it completed. Many questions asked in our groups can and will be answered in this project.

We are hoping to present it to a set of fresh eyes...a set of doctors who know next to nothing about Periodic Paralysis and have no biases or preconceived ideas or who are using old and outdated information. It is our hope that these guidelines will be used as the new standard for easily recognizing and diagnosing Periodic Paralysis in a timelier manner.

Calvin and I are retired special education teachers and we both have degrees in psychology as well. We have three published books and are working on writing our next books, as well as this project. For the past several weeks, I have been in a slump and not been able to do much writing. I am finely beginning to feel a little better and I want to get this project done and present the results to our members and doctors.

Until Later…

Periodic Paralysis Network Diagnosis Project

Hello All,

I wanted to apologize for not writing or communicating in the past few weeks. I have actually not been very bad physically, but have hit what may be called "writer's block" with a little depression and some PP fog. This has developed after I have spent the better part of the last 3 1/2 years writing all day, every day as I was able. The break has been good for me and I am about ready to get back into my regular routine and complete several projects including a new book and our big project: “Creating Guidelines/Criteria For Diagnosing Various Forms of Periodic Paralysis Clinically”

Over the past year we have presented a series of four surveys attempting to gain information in order to develop a new set of criteria, which doctors can use to better diagnose individuals with Periodic Paralysis, clinically (based on symptoms...not genetically). The surveys gave us a great deal of information and many surprises and has been overwhelming to sift through. It has taken much longer than first thought to process and the surprises have taken us in a few new directions. The following is an outline of the project.

                                                                               PPN Project:
                                                                  Creating Guidelines/Criteria

For

Diagnosing Various Forms of Periodic Paralysis Clinically

(Without using Genetic Testing)

About 40 % of all individuals suffering from the devastating affects of various forms of Periodic Paralysis do not have a known genetic mutation. By the time some one discovers this, many, many years have passed after many misdiagnoses and wrong medications, etc. Most doctors will not diagnose someone without a known genetic code. Other doctors will not diagnose based on a lack of knowledge or by using outdated information.

Without a diagnosis individuals cannot get the medications they need or may be given medications, which may harm or kill them. They may not be able to get disability or have to continue to work, which may make them worse. Some may attempt to prove they have PP by provoking symptoms, which can kill them. This does not happen in other diseases. Other diseases are diagnosed based on their symptoms. This is called a “clinical” diagnosis.

We are attempting to create a set of symptoms and characteristics called criteria, to be used by doctors to make a clinical diagnosis, once everything else has been ruled out. This final report or study will be presented to a team of doctors, who are not related to the PP “specialists”, but a set of fresh eyes, to look at the results. This report may be published and will hopefully be used as a guideline for any doctor to diagnose all forms of PP based strictly on their symptoms.

Many members of our group/board at the Periodic Paralysis Network, who are not diagnosed genetically, display many of the same symptoms and characteristics of Andersen-Tawil Syndrome (ATS) but have many more symptoms which are the same but out of the ordinary for ATS and seems to have an autoimmune component. We believe there may be a type of ATS without a known genetic code, which we are calling Periodic Paralysis+10 Syndrome. We are hoping the data collected may shed some light on this possibly new form. We hope to be able to have this new form be recognized and be diagnosed based on the symptoms we will outline.

Thank you all for your support.

Until later…

Our Diagnostic Rights

Hello All,

This morning an organization fighting for the diagnostic rights of individuals with rare diseases was brought to my attention. I am relieved that an organization like this exists. I have been writing about and fighting for this issue for over three years now as it relates to those of us with Periodic Paralysis.

 
I, myself, was 62 years old when I finally got my diagnosis for Andersen-Tawil Syndrome after enduring its effects over a lifetime and being misdiagnosed over and over. I was even diagnosed with "conversion disorder", "pseudo-seizures", laughed at, scoffed at, lied about and at one point told I was "too old" to be diagnosed with Periodic Paralysis (PP). I was given harmful medications I did not need and which caused permanent damage and I am now permanently disabled.

For over three years I have written about the problems with the genetic vs. clinical diagnosis in Periodic Paralysis. One actual PP group believes that if there is no genetic mutation found during genetic testing, then Periodic Paralysis does not exist and those people are not welcome in the group. The truth is, about one-half of those individuals with Periodic Paralysis have a form of PP for which no mutation has been discovered yet. Those of us with PP need to be diagnosed clinically, based on our symptoms, after all else has been ruled-out.

We should not be shunned by such an organization but, welcomed with open arms and receive help and support. That is not happening. The other group made such a point of pushing the genetic testing and then turning away those without a mutation found, that doctors have followed their lead, especially the specialists. It is common in today's world, for doctors to believe that no genetic code equals no diagnosis.

The other issue of denying a diagnosis is based on out-dated information. That is if the potassium does not shift into a low or high range than PP does not exist. This is totally wrong. The potassium does not have to shift out of normal range for muscle weakness or paralysis to occur. Also, sometimes it may shift, but it happens very quickly and may not be caught during testing, minutes or hours after an episode begins.

Medical professionals need to be educated. That is partially why we wrote our book, Living With Periodic Paralysis: The Mystery Unraveled. We are hoping they will read it and better understand PP for faster recognition, diagnosis and proper treatment.

Many of you are still waiting and fighting for a diagnosis. Some of you have family members who have died waiting for a diagnosis or while attempting to get a diagnosis. Many of you are getting worse as the years pass by while you are frustrated and losing or have lost your quality of life.

In our Support and Education Group, a survey indicates that out of the 17 people (at the time of the survey...there are more now) waiting for a diagnosis, the longest wait is now 61 years followed by, 55, 49, 46, 43, 39, 38, 35, 33, 31, 29, 25, 25, 20, 18, 15, 2!! No one should have to wait a lifetime for a diagnosis and proper treatment.

This organization is fighting these issues for us. I wanted to pass this information along to you. This appears to be a great organization.  

The Coalition @DiagnosticRight

The Coalition for Diagnostic Rights brings together doctors, patients and professionals of all sorts in the effort to eradicate the practice of denial of care.

http://www.diagnosticrights.org/

http://www.youtube.com/watch?v=j8gABEg-lJs

https://www.facebook.com/pages/The-Coalition-for-Diagnostic-Rights/548604995235123

Until later...

The Five Stages of Loss in Chronic Illness

Hello All,

When someone, or someone we love, discovers they have a disease or medical condition for which there is no cure, and for most part no treatments and that they will be this way for the rest of their lives and probably get worse as time passes and may even die from it; they most likely will endure a series of several stages of mental, emotional and psychological experiences. The realities of such a situation create feelings, fears and questions, which are quite common and expected under such circumstances.

The questions like “Why me?” or “What did I do to deserve this?” easily come to mind. “There must be a mistake,”  “There has to be a cure,”  “How bad will I get?” and “How can I get through this?”, will surely follow.

According to Wikipedia, the Kübler-Ross mode, also known as “the five stages of grief, is the series of emotional stages that someone experiences when faced with impending death or other extreme, awful fate. The five stages are denial, anger, bargaining, depression and acceptance... ...these stages are not meant to be a complete list of all possible emotions that could be felt, and, they can occur in any order. Her hypothesis holds that not everyone who experiences a life-threatening or life-altering event feels all five of the responses, as reactions to personal losses of any kind are as unique as the person experiencing them.”

Kübler-Ross, who worked with dying individuals, originally developed her five-stage model based on observations of those suffering from illnesses, which were terminal. Over time she believed this theory also applied to those suffering any form of devastating personal loss or upon learning the diagnosis of a chronic illness or disease...."

http://en.wikipedia.org/wiki/K%C3%BCbler-Ross_model

After Kübler-Ross wrote her book, “On Death and Dying,” others have written on this subject and present a variation of the original five stages. Chronic illnesses present with different symptoms and characteristics but they are the same in that each individual experiences denial, anger, fear, hope and acceptance. Many other feelings may be a part of the cycle of stages. There is no special order that someone goes through these when someone is diagnosed with a chronic illness and it is not uncommon to go back and forth through them. This can happen as the health conditions worsen or improve.

It is suggested that no matter what stage a person may be in, they need to go with it. That is probably where one needs to be at that given moment. It is wise not to try to push it or try to hurry into the next stage. Let it naturally happen.

http://fibrofighter.tripod.com/17stages.htm

For those of us with various forms of Periodic Paralysis, the above information applies. We do first face denial. Periodic Paralysis is a very cruel and progressive illness for many of us. We experience the paralysis and muscle weakness and feel the pain associated with it. We read and study about it. We recognize what is happening. But, we do not want to believe it. We deny it.

 
As we lose our muscle strength, the ability to walk or to eat what we want, to do what we want or need to, lose our jobs and careers, the ability to drive, our independence and possibly even family members who do not understand, we face great loss. We become angry and sad.

While in paralysis we may not be able to move, see or speak. We have arrhythmia, fluctuating heart rate, fluctuating blood pressure, choking, and problems with swallowing. We can actually die during an episode from the arrhythmia, or respiratory or cardiac arrest. We became very fearful.

When we learn there are medications that may help us; diets that can reduce the amount and severity of our paralytic attacks and that avoiding known triggers will improve our daily life; we become hopeful.

 
Learning as much information we can about Periodic Paralysis; changing our diet, avoiding the triggers, making natural lifestyle changes; creating adaptations in how we do things; joining support groups and seeking out therapy or counseling and learning relaxation techniques can bring us to an acceptance of being in control.

As things change and our muscle weakness progresses, we suddenly develop more paralytic attacks, we must deal with an infection or the side effects of the medication we are given, more breathing issues develop or we become unable to do yet another simple daily activity, a new symptom begins or another grandchild ignores us; it is easy to slip back into a sense of loss, fear, depression or anger.

 
When this happens, communicating with friends in a support group who understand or a therapist can be the best way to slip back into hope and acceptance.

We must never give up our struggle and we must continue to have hope that there may be a new medication or a new form of treatment that may be developed for treating the dreadful effects of Periodic Paralysis. We must continue the fight for our self, our children, our grandchildren and our great-grandchildren. We must continue to bring awareness of Periodic Paralysis to our families and friends. We need to teach the medical professionals in our lives about it for better and faster recognition, diagnosis and treatment.

However, no matter which stage we may be at this moment; denial, anger, fear, sadness, depression, hope or acceptance; it is best to not try to push it or try to hurry into the next stage or feel guilty about it. Let it naturally happen. It is acceptable to feel sadness, fear or anger at each new step or loss. We each have a right to our beliefs, feelings and thoughts at any given moment.

We at the Periodic Paralysis Network are here for each and every one of you no  matter which stage you may be experiencing.

Until later…

Clinical Diagnosis vs Genetic Diagnosis

Hello All,

I have been very ill again with the effects of metabolic acidosis and low potassium and have been unable to write very much. I apologize for the delay in adding a new blog.

This morning one of our members had a concern and question about the need for a genetic diagnosis. This person has a clinical diagnosis, based on symptoms and characteristics, but was denied access to a genetic testing due to the fact that having a genetic diagnosis would “not change the treatment.” Many comments and replies were added.

After reading all of the comments and then writing my own, which follows, I had a revelation! "What a switch!!!" It is usually the other way around. One must have a clear genetic mutation to be diagnosed, believed and receive treatment. So, this may be the beginning of the medical professionals, insurance companies and more knowing that a clinical diagnosis can be and should be made first and be accepted.

This is what I have been hoping for, working towards and wrote about in my book and on our boards and in this blog!!!!

The following is what I wrote.

”To weigh in here, I was diagnosed clinically with Andersen-Tawil Syndrome (ATS). My genetic testing turned out to be negative. This is because I obviously have a variant that has yet to be found. Forty percent or more of us will not get a genetic diagnosis because our type or form of PP has not been discovered yet. And, if you already have a clinical diagnosis, based on symptoms and characteristics, it can be overturned or attempted to be overturned by uninformed or poorly informed doctors, even Periodic Paralysis specialists. This has happened to members of our group, who later did get a genetic diagnosis as did other family members. Sometimes it is best to leave "well-enough" alone.

That being said, my DNA is now being studied at Baylor through whole genome testing (I just happened to be in the right place at the right time with the right criteria to be accepted into the study.) looking for a new variant of Andersen-Tawil Syndrome. However, it is too late for me really to know if I have a genetic mutation or not. The doctors and specialists tell me there is nothing they can do for me other than what I am doing, but it may be helpful to my children and grandchildren and great-grandchildren to know the exact type, for better and more proper treatment, sooner.

In my daughter's case, she now has a diagnosis and her doctor told her, that there was nothing she can do for her other than what she is already doing. She told her that it is obvious that what she is doing is correct, because there has been great improvement. She wanted to know what she was doing and how she knew what to do. Then my daughter handed her a copy of our book and said, “I have learned everything from my mom!!!”

As far as I can tell and believe, a genetic diagnosis is just "icing on the cake" and can be pursued after a clinical diagnosis has been established. Testing in Germany is free except for the cost of getting the blood there (which can be quite costly), and there is no guarantee of getting a genetic diagnosis. That must be kept in mind if that decision is made. Most testing from a doctor's office is for only a few types so even if the doctor orders it, it may not show up if it is an unusual or unknown variant or if it is ATS and Hypo is what the test is for or hyper and they test for ATS.

Some things to consider, if blood is sent to Germany, you do not need a doctor to order it so that leaves your doctors out of the loop which can be helpful, in case it comes back negative. Also one must be aware of the time involved in testing. Some people wait an average of a year, others a few years. It is not a quick answer or a quick-fix situation.

I waited over a year for my results from Germany and have been waiting for 14 months for the results of my whole genome testing at Baylor.

Do I worry about the results..."no". No matter what the results of the test turns out to be, I must continue to treat my symptoms as I have, naturally, the best I can with the knowledge that I can take no medications and have no surgeries. Because, in my case, great and irreversible damage was done by all the wrong diagnoses and all the medications I was given.

For most of you, you know you have a form of PP. There is no doubt. Discovering your triggers and following a balanced diet that works for you and other natural methods can make a big difference, regardless of the type of PP you have. We are each different and have to treat our symptoms differently based on what we know and what our symptoms are. We learn quickly what makes us worse or better.

The medications of diamox, acetazolamide, diuretics and more only work for a small percentage of us and for some of those people, damage is being done, while they are unaware such as kidney stones, metabolic acidosis, hypokalemia and growth issues.

Getting a clinical diagnosis, based on our symptoms, is the most important thing/step we can take/get. Once it is on paper, we are at least believed for emergency care issues, hospitalizations, possible medications, school issues for children, insurance, validation, vindication, disability and much more.

It is an individual decision to do genetic testing once one has a clinical diagnosis and best made knowing all of the facts.

Until later…

Rare Disease Day!!!

Rhabdomyolysis

Hello All,

Yesterday someone asked me a question about the urgency to urinate after or as you are coming out of an episode of weakness or paralysis. The answer to this question is yes, this is a very common part of the process. This is due to the body retaining fluids during an episode.

This person also mentioned a problem with urine after an episode being dark brown and having an odd smell. Now this is not normal and the sign of a serious condition. In case others of you may have this happening I wanted to share my answer with you.

 

"Hello,

It is common for one to not have an urge to urinate until after the episode and when coming out of the weakness or paralysis. This is because the fluids in the body are elsewhere being retained during the episode.

  
 I always have an urge to urinate quite badly but it is always difficult for me to move or walk so my husband must get me there by way of my wheelchair and help me onto the toilet. This is the most embarrassing thing for me, though we have been married for nearly 34 years.

  
 The thing that concerns me is the color you mention. That is a sign of a serious condition called Rhabdomyolysis, or muscle wasting. Do you take statins? Statins are a main cause of this. If not then it is even more serious. You should have it checked out right away.

Those with the genetic mutations found in CACNA1S, forms of Hypokalemic Periodic Paralysis are more susceptible to it."
 

According to Wikipedia:

"Rhabdomyolysisis a condition in which damaged skeletal muscle tissue breaks down rapidly. Breakdown products of damaged muscle cells are released into the bloodstream; some of these, such as the protein myoglobin, are harmful to the kidneys and may lead to kidney failure. The severity of the symptoms, which may include muscle pains, vomiting and confusion, depends on the extent of muscle damage and whether kidney failure develops.

...Release of the components of muscle tissue into the bloodstream causes disturbances in electrolytes, which can lead to nausea, vomiting, confusion, coma or abnormal heart rate and rhythm. The urine may be dark, often described as "tea-colored", due to the presence of myoglobin. Damage to the kidneys may give rise to decreased or absent urine production, usually 12 to 24 hours after the initial muscle damage...

...Causes: ...hypokalemia (low potassium levels)".

 
http://en.wikipedia.org/wiki/Rhabdomyolysis Rhabdomyolysis - Wikipedia, the free
encyclopediaen.wikipedia.org

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1126495/

 

Until later...

Over 150 Members Now!!!

I wanted to let everyone know that the Periodic Paralysis Network (PPN) now has over 150 members!!!! Congratulations to us all!!!! Thank you all for your support!!!!

Metabolic Acidosis and pH Balance

Hello All, 

Yesterday I had a very rough day. I am, however, doing better today. I did end up in paralysis and after coming out of it I was very weak and well you know the rest of that story! I did discover that I was in metabolic acidosis and had very low potassium so treated it with my potassium bicarbonate and sodium bicarbonate.
 
For awhile, I have been lazy and not used my pH meter. It is a little difficult to use, especially when I am not feeling well and on the edge of paralysis. So I discovered that Calvin had ordered the strips quite awhile back and did not realize we had them. I accidentally found them the other day.

When I woke up yesterday after 9 hours of sleep, a very unusual thing for me, and I felt really strange. I took my vitals and used the pH testing strip. I almost fainted when it was bright yellow and at 5.5 or lower. I knew immediately what to do but I went into paralysis anyway. After coming out of it, I continued to take more potassium and bicarbonate through the day and ate nothing that had any acidity whatsoever. By bedtime I was back in a better pH range and it held through the night.

So, my advice to all of you is to get some of those strips and also monitor your pH balance. PP is a mineral metabolic disorder which makes us prone to metabolic acidosis. When trying to figure out our triggers, the pH balance must be considered.

That is why we recommend the pH balance diet. It makes a huge difference if I follow it faithfully. I went from four or five full-body, severe episodes, lasting several hours each, a day to one or two a month which are less severe and lasted a shorter time.

If I had not realized the pH balance issue yesterday, with the levels I was at, I could have died. This is a very important issue for all of us. 

This is a good link about the pH balanced diet:http://www.rense.com/1.mpicons/acidalka.htm

Thanks for your continued support.

Until later...